Further to my post above, the President has just drawn my attention to a paragraph in the report which CSF published earlier this year on a survey into Language Support for Anglophone Patients (available on request from the National office in Benest). Section 5.10 para 2 says that:

" ... it should be noted that under the conditions of the Plan Cancer (2003-2007), put in place by the French Government (1), patients diagnosed with cancer have a right to quality care from the moment of learning the diagnosis. This is further elaborated in documentation from La Ligue Contre le Cancer (2). It is made clear that quality care must include a Personal Care Plan, which should explain the different stages of treatment. It is understood that this Plan is required to be given to patients in written form to take away, so that they can think about it at home before making difficult decisions." (My italics)

The references are:
(1) see Links Forum
(2) Second URL not permitted in post - so added as a separate post below.

This is therefore supposed to have been implemented in full nearly three years ago! (We are now into the second 'Plan Cancer').

Last edited by pennycsf on Thu Jun 03, 2010 11:41 pm, edited 1 time in total.
Reason:All links to external websites however reliable must be in the Links Forum to comply with HONcode

Sorry Moneybags, to comply with the Hon Code, all external links have to be monitored and the easiest way to do that is to put them in a separate Forum. The websites links are therefore to be found in the Links Forum.

Hi,
an update.
my husbandhad his last chemo last friday, of this cycle and came home with a folder, into it was tucked blank appointment cards with various docs names on and a photocopy of the sheets with chem amounts and names on and the nurse said so we could fill the book in ourselves. he had little or no advice on anything to avoid, risk from infection etc.
No results of any of the tests done in the last month during all the to and fro to hospital as well as for the scintagrphie results from april which has only been given verbally.
HOWEVER, my doc, i changed last year, has taken over my husband and she arrived yesterday for a home visit. She did a complete exam, checked his 'notes' and has demanded on his behalf all results back to february , including scans.
she explained the chemo, possible side effects, how to help avoid them, what to eat and drink, about not kissing our grandchilren for a while due to lowering of immunity.
She also said that after she has all the notes she will call again and will go thro it all.
She has also requested that in future all results are doubled to her.
I really feel for the first time since he was diagnosed my husband has someone in his corner apart from me.
Cancer is a bitter pill for all those suffering and their nearest and its hard enough without the battle we have had.
A big thank you to everyone here who has helped, you are doing such a good job,
bon courage to all, and yes i will keep you posted

Dear Lottie, It is probable that by now your husband has started his chemo. I wish him well and hope that your queries and concerns have been answered.What I do not understand in your message is that you had not, at the time of writing, met the oncologist. My own experience is that a meeting is arranged before the start of the sessions so that the process can be explained and my questions answered. I found this helpful so that when I started the chemo he was a familiar face of whom I could ask questions. I even got him to write down the chemicals they were pumping through me.
You sound a very brave person who is having to be strong for your husband. My heart goes out to you.
Best wishes, Maggie

lottie13 wrote:first of all thanks to all those who have sent messages and support to my husband.
Tomorrow he is to start chemo in Vannes. We have a list of questions that we need answers to and hope to get them, I am starting to sound like an old record!
He is due to go in for 5 days intravenous chemo.
We have not yet met the oncologist.We have no idea what they are proposing.
We ahve no idea why they have decided on this treatment and what they are hoping to achieve.
We have had no prognosis.
We have no idea whether they have ever treated this type of cancer in Vannes before.
We do not know who my husbands neuroendocrine expert is; who they apparently have been talking too.
BUT there is no way he is going to have chemo unless these and many other questions are answered.
It is difficult to post this but I do not want anyone else to go through this journey and to reach this stage with so little information.

Hallo to all and especially to Lottie13, I have had 6 chemo treatments all of them without benefit of a livret of any sort. Whenever I had a problem I phoned my GP until she vitually said that I had to have this treatment if i wanted to live and therefore get on with it and stop complaining. At the hospital i was firmly told to take nothing that wasn't prescribed for me including vitamin pills. I didn't ask about wine and stuff but I found I didn't want it anyway.
For the radiotherapy which I will start next month at Dax, it is so different. I have the name of my doctor, a nurse I can call at any time, the names and 'phone nos. of psychiatrist, dietician etc. All these things were available at the Layne, you just had to ask about them first. Are there any other people out there who are/have been treated at the Layne? Please get in touch.
I hope your husband is coping Lottie. Best wishes to all out there.